This is an article that I’ve wanted to write for a long time, but it’s a topic that’s deeply personal to me. I wanted to make sure that I was in the condition to do the subject justice before I started writing it. I started and re-started writing it a number of times because I felt like I wasn’t in a place physically or mentally where I could describe it properly. Finally, I just said screw it and put pen to paper.
“You aren’t sick.”
“This is probably just stress.”
“I can’t find anything wrong with you.”
This is where the journey begins for most people who have autoimmune disease. They subjectively can feel that something isn’t right, but they can’t quite put their finger on it. They may constantly feel fatigued, have symptoms that come or go, or simply feel different from how they normally do. They eventually visit a doctor who gives them a quick examination, does some basic blood work, assures them that everything is alright and then sends them on their way.
Then it gets worse. For some people, it becomes much worse. The symptoms become more severe and can start to take on physical manifestations that physicians can no longer ignore. Bloodwork and serologies may show indications of early damage and dysfunction. Physical examination may show neurological symptoms such as diminished or absent reflexes, eyes that move slowly or are unresponsive to light, or abnormal muscle tone. Patients may mildly lose sensation or the ability to feel or move certain parts of their body, or experience intense pain for no attributable cause. Amazingly, even at this point most physicians will respond by doing relatively nothing, and while they will point out the anomalies they will usually just scratch their heads, do little to address the problems, and once again send the patient on their way.
This is a familiar story for most people who have had to deal with autoimmune disease. Achieving the diagnosis is usually as hard as treating the disease itself, and sometimes even more so. In some cases, achieving a definitive diagnosis is not even possible. Much of this still stems from a fundamental lack of education by doctors to consider autoimmunity in their differentials, and is made worse by the fluctuating nature of the symptoms in many of these diseases.
For those unfamiliar with the phenomenon, autoimmune disease is a class of disease where the body’s own immune system mistakes healthy tissue or cells for outside invaders and forms antibodies to attack these tissues. This results in a spectrum of diseases depending on what tissues are attacked and what specific antibodies are being used to cause the damage. Some of the more common and well-known forms of autoimmune disease are:
Multiple Sclerosis (MS)
Crohns Disease
Sjögren’s syndrome
Type I Diabetes
Rheumatoid Arthritis (RA)
Lupus (Yes House, it is indeed sometimes actually Lupus)
Myasthenia Gravis (MG)
Lambert-Eaton Syndrome
Hashimoto’s Disease
…among many, many others
One of the hallmarks of autoimmune disease is that while it tends to be insidiously progressive, the symptoms can be radically inconsistent. You can have days when you feel alright, days when you feel mediocre, and days when you feel absolutely terrible. This has to do with the fluctuating levels of the offending antibodies that are attacking the body; as the antibody levels rise, the symptoms correspondingly get worse. Your body’s immune system constantly reacts to things around you and your own condition. Things like getting sick, being in a dirty environment, getting stressed, or being emotional or angry will precipitate an increased response from your immune system and invariably cause your symptoms to get worse.
Many types of autoimmune disease feature a phenomenon called an “immune crisis” in which the negative antibodies attacking the body rise to critical levels that can cause severe and life-threatening damage to the host if left unaddressed. For people with Multiple Sclerosis, an immune crisis frequently precipitates a severe attack on the central nervous system, usually destroying neurons and leaving behind the lesions or scars for which the disease is named, sometimes with new disability resulting from the loss of said neurons. For people with Myasthenia Gravis, an immune crisis can cause their peripheral nervous system to become completely unresponsive, making their muscles become extremely weak and making it difficult or impossible for them to breathe or swallow. My specific disease causes an immune crisis that produces severe muscle stiffness and fatigue, in addition to autonomic and motor neuropathies.
Autoimmunity may hamper you, it may disable you, it may outright kill you. And it if it doesn’t do these things physically, it may do them mentally, emotionally, and spiritually until you fundamentally fade from who you used to be.
For most people, the diagnosis is an overwhelming one. It is especially overwhelming because for almost everyone, the disease will not remit and will be with you for life. There is generally no cure for autoimmune disease, as the human immune system is critically and almost amazingly still one of the most poorly understood tenets of modern medicine.
Perhaps the most overwhelming part of all is that this ominous, undefeatable opponent isn’t even something external. It’s you.
For a long period of time in medicine, there was no such idea that autoimmune disease itself even existed as a concept. Many doctors would falsely diagnose patients as just having stress, or psychosomatic symptoms, or simply malingering and seeking medication. This was especially true for women, who are statistically more likely to have autoimmune syndromes than men. Before autoimmune disease was uncovered there were old adages in medicine among doctors that women were simply “needier” than most of their male patients; the likelihood was that these naive (or more plainly, arrogant) physicians simply did not realize that many of these women suffered from some form of autoimmunity that medicine had yet to catch up with.
Unfortunately, this lack of information still prevails today, as most doctors are still under-educated and under-informed regarding the presence and nature of autoimmune diseases. Only the best hospitals can successful diagnose them with regularity, and as a result most people suffer unnecessarily for long periods while they stumble blindly trying to find answers for what is happening to their body. This is made more unfortunate by the fact that the prognosis for most autoimmune disease is significantly better the earlier it is detected; this is especially true for diseases that can cause permanent damage such as Multiple Sclerosis and Lupus.
As I stated earlier, with autoimmunity the opponent is you. And unfortunately, that means that the harder you hit your disease, generally the harder you will hit yourself. The mainstay treatments for most people are immunosuppressive drugs, the predominant medication being used in most cases being prednisone. Most immunosuppressive medications carry negative side effects in the short and long term, but prednisone is especially egregious in doing damage to patients if taken at high doses for the long-term, as well as causing a slew of short-term negativities. It can cause cataracts, induce diabetes, cause bone loss and high-blood pressure, along with a mountain of other side effects. Unfortunately, for many patients, it is overwhelmingly the most effective, least-expensive, and fast-acting medication for modulating their symptoms. Doctors use prednisone for one very simple reason: it works, even if it comes at a cost.
There are other immunosuppressive drugs that are available, which are usually less effective than prednisone and different (but perhaps not better) side effect profiles. The most commonly used agent among these is a drug called Azathioprine (or Imuran), but others include Cyclosporine, Tacrolimus, and Mycophenolate Mofetil. Occasionally, more potent drugs usually used for cancer therapy such as Methotrexate or Cyclophosphamide are employed due to their potent side effects of rapidly diminishing the immune system. However, all of these drugs also come with their associated risks, which include nephrotoxicity, hepatotoxicity, and an increased long-term risk of developing malignancies due to reduced cancer immunosurveillance. In short, current drug-based therapy for autoimmune diseases is still extremely clumsy and poorly resolved. In addition, almost all drug-based treatment options will increase the patients risk for infection due to their broad immunosuppressive effects: the positive antibodies being produced by your body will be reduced as much as the negative ones, leaving patients much more susceptible to contracting disease from their surroundings.
The true “best options” for immediately inducing major improvement in most autoimmune diseases come not in the form of any drug, but rather in the form of two hematologic treatment options: Plasmapheresis and Intravenous Immunoglobulin (IVIG). Both are broadly and almost immediately effective against almost all autoimmune diseases, but come at an extraordinarily high financial cost that generally prevents them from being utilized as mainstay treatments.
In plasmapheresis, a large central catheter line is placed into a major artery which draws blood from the body and titrates it into an attached machine. This machine filters out the plasma component of the blood, which contains all of your antibodies (both good and bad) and then returns the remainder of the blood (red cells, platelets) to the body along with a protein supplement to help encourage the reconstitution of the patient’s plasma. Repeated sessions are usually needed, but the therapy usually induces incredibly rapid results since it so quickly diminishes antibody levels compared to drug-based options. Care needs to be taken while therapy is ongoing as these reduced antibody levels can increase susceptibility to infection, but plasmapheresis is generally regarded as a safe and effective means to induce rapid improvement for most autoimmune conditions. The largest risk involved is in the placement of the central catheter line, which usually needs to be planted into an artery or larger vessel for the process to be completed quickly; there is some risk for hemorrhaging if the line is placed incorrectly which can lead to potentially fatal blood loss if performed incorrectly. Still, plasmapheresis has a good safety record and is an important option, especially in the situation of an ongoing immune crisis.
The second option for rapidly inducing improvement is Intravenous Immunoglobulin, which is almost the medical inverse of plasmapheresis. IVIG is a blood product made of the coagulated plasma from tens-of-thousands of healthy donors; it contains a huge sum of antibodies from healthy people who don’t suffer from autoimmune syndromes. It was originally only used to treat immune-deficiencies and disorders such as AIDS, but was discovered to have a curious and potent effect when administered to patients with autoimmune disease. When repeatedly infused into patients who have autoimmune syndromes, it dramatically raises their immunoglobulin levels and has a strong tendency to dramatically reduce the titers of all “abnormal” antibodies present in the host, which induces the same type of rapid improvement seen with plasmapheresis. It also has the advantage of not requiring a central arterial line for administration, as well as maintaining and even reinforcing the patient’s healthy antibodies which makes it an even safer treatment option for administration.
Unfortunately, both of these higher-quality treatment options generally only produce effects which last for several weeks up to potentially months. Without sustained immunosuppression, the offending antibodies ultimately return and reconstitute themselves, causing the patient’s symptoms to remanifest in turn. And given that each session of plasmapheresis and IVIG usually costs thousands of dollars (with repeated sessions generally needed over the course of a week) no insurance company in their right mind will justify them as a mainstay treatment unless the patient’s life itself is physically at risk. Only the extremely rich or those with imminent medical necessity are able to receive these therapies on a regular basis, leaving the average patient stuck with the clumsy and self-damaging arsenal of drugs previously described.
Alright. We’ve got all that out of the way. So the first half of that was pretty negative. Really negative, in fact. In the next article on autoimmunity I’ll go over some positive developments and future treatments that could turn all of that around.
